Annabella is one and a half years old and has a laugh that lights up the room. She is an inquisitive young girl, with a desire to learn, a love of play and a strong fondness for her older brother, Vincent.
“She is a typical baby in that way,” said Jennifer McInnes, infant development consultant with the Comox Valley Child Development Association.
Annabella has Down syndrome, and the CVCDA has been working closely with parents, Katalina Klose and Azak Chowns, since the family first moved to the Valley just over a year ago. This year, Annabella and Vincent have been chosen as the CVCDA’s Telethon poster children.
“[Annabella] definitely has opened our eyes to the bigger spectrum of life – that there is more to life,” said Katalina. “She just brings so much more to us, she loves us unconditionally, she has such joy about everything.”
But raising a child with Down syndrome comes with its own challenges, something Katalina and Azak found out before Annabella was even born.
When Katalina found out her unborn baby had fluid in her brain, she was devastated.
Katalina still remembers the tests, the appointments, the tears and the weeks of waiting for the results that would determine the fate of her second child, and younger sister to Vincent.
“They don’t tell you anything until they have all their tests done, and we thought something was severely wrong,” she said. “I kind of figured it was Down syndrome… I just had this urge that it was something like that – mother’s intuition I guess.”
The doctors eventually told Katalina there was a 95 per cent chance her daughter had Trisomy 21.
When Annabella was born months later, she was immediately transferred to the neonatal intensive care unit due to health difficulties, something Katalina had not been prepared for.
“She had fluid in her lungs and a heart murmur and her blood was clotting – like as soon as it hit the air, it just turned to clots due to low blood sugar. It was a lot,” said Katalina. “I guess it’s typical for Down syndrome… we didn’t really know about that because we didn’t really get into that while I was pregnant.”
Katalina said as soon as Annabella was diagnosed with Down syndrome, she was given pamphlets and lots of information, but much of it was difficult to make sense of.
“It’s so overwhelming as a parent to read the packaging that’s given to you [about Down syndrome] because it’s all medical, so it’s a lot of stuff that you don’t really [understand],” said Katalina.
That’s where the CVCDA comes in.
McInnes has been working with Annabella since the family started with the association and has been helping Katalina navigate the new world of parenting a child with Down syndrome.
“[Annabella]’s on her own path, so we try to go with what the parents are more comfortable with, taking into account her muscle tone, her ability to chew and swallow, and just continue to encourage trying new things in really tiny baby steps,” said McInnes.
Children with Down syndrome typically have looser joints and lower muscle tone, something that affects Annabella as well.
Though she was able to lift her chest and head up at four months, her lack of lower body strength soon became evident. Annabella has a tendency to roll on her hips, bending her hip joints in unnatural ways – a habit that could permanently alter her ability to walk.
“Her gross motor [skills] is one of the biggest things we’ve been working on and that’s where she’s more at risk for injury because of how loose and soft her joints are,” said McInnes. “The muscles aren’t as developed, they’re more floppy.”
The association uses a family-centred approach, making sure that the parents are in the driver’s seat. They also do home visits to minimize strain on the schedule of a busy family.
“We work in really close consultation with the physiotherapist who gives lots of ideas for exercises and activities that are going to strengthen. So lots of floor time, lots of time on her tummy,” said McInnes, adding that Katalina has been excellent at following through with suggestions.
Katalina’s son, Vincent, also does some work with the CVCDA and McInnes even though he is too old for the Infant Development Program.
Vincent has a speech impediment, but it wasn’t until McInnes started working with the family that they discovered the cause.
McInnes referred him to a hearing specialist who discovered he had fluid in his ears, which was impacting his ability to hear certain sounds, therefore affecting his speech.
“With the audiologist, she was able to find out how much he was hearing and the sounds he was hearing, which made perfect sense as to why his speech sounded the way it did,” she said.
When Vincent is in a loud place like a play program, it can be overwhelmingly loud for him, causing him to act out.
“If it’s too loud in the room, he will try to make himself louder to try and drown out the sounds and that looks like behavioral issues,” said McInnes.
Vincent sees a speech and language pathologist, and is also attending the Aboriginal Head Start Preschool Program. A supported child development consultant with the CVCDA checks up on him regularly to make sure is he doing well and is being included in all parts of the program.
Katalina says there are a lot of unknowns as a parent, especially with a child who has Down syndrome, but the CVCDA has been a huge help along the way.
“They give me lots of tools to help and they reassure you of anything that you think is going wrong,” said Katalina. “They’re really good at reassuring you that everything is normal and that’s what happens with Down syndrome.”
The 2018 Comox Valley Child Development Association Telethon is set for Sunday, Nov. 4. Keep reading the Comox Valley Record for more updates regarding this year’s telethon.
For more information on the CVCDA, visit cvcda.ca
